How to Solve a Problem Like Allen Frances?

So I thought I'd drag out an old post, as it is still relevant in addressing the tripe he keeps dishing up.

This article http://www.project-syndicate.org/commentary/frances1/English had me seething. The author, Allen Frances, is a psychiatrist and was the chair of the DSM 1V task force. A quick google search also reveals several controversial articles he has had published in the last year or so about the current revision of the DSM.

I suppose it was to be expected he would have ASD in his sights. Being a spectrum disorder it is easy to make a flimsy argument that the perimeters are now too broad and kids who are simply shy or quirky are being falsely labelled as Autistic. (I know Mr Frances is not the only person spruiking this idea) The proof of this, he suggests, are the ever increasing amount of children, and adults, being diagnosed (dx) with an ASD. He goes on to suggest this increase in numbers is being driven by parents who are becoming informed about ASD and it's various symptoms via the internet. And the motivation for parents wanting this life long disability dx? Apparently it's de rigueur. The trendy thing to have. And as an added bonus apparently your child then gets access to "expensive school services".

So how do we scheming parents manage to fool the speech therapists, developmental psychologists and paediatricians into giving our perfectly normal offspring this groovy label? Well he doesnt explain that part. So we are left with nothing more than the claim. No evidence, no research, not even an example.

Would any parent really want this for their child (Munchausens by proxy anyone?) or conversely would professionals really be willing to diagnosis a child with Autism with no clear evidence of neurological abnormality? Are there really that many kids walking around misdiagnosed with Autism and Aspergers that can account for the increase in numbers?

Frances states "A second possible explanation for the explosion in Autism is that previously missed cases are now being more accurately diagnosed. This is probably a factor, but again only a minor one."

How curious. Greater understanding of how broadly ASD presents, despite there being clearly defined criteria in the DSM would most certainly account for the increase. As would better assessment tools. In fact I am sure it is the major reason for the increase in numbers. Having recently finished Roy Grinkers 'Unstrange Minds ('http://www.unstrange.com/unstrangesummary.html) in which he convincingly outlines this theory, I am of the mindset that we are certainly getting better at identifying Autism, and therefore are now correctly diagnosing those who were once thought of as obsessive, neurotic or psychotic, amongst other incorrect terms.

In fact at the very beginning of the article the author says that the sharp increase in diagnosis occurred directly after the publication of the DSM 1V. Surely this supports the above notion of increasing understanding leading to increasing identification?

He also states that the "fear of Autism is so great". If this is the case why are parents demanding their children be diagnosed as Autistic? There seems to me to be some inherent contradictions in the article.

The problem I see with someone in this mans position espousing this idea of Autism being the latest "fad", is the impact not just of invalidating what all us parents and our beloved children live with each day, but the potential to add doubt into the minds of the public and those authorities who have the power to make service funding decisions. The fact is whether Allen acknowledges it or not, there is a woeful lack of services available to Autistic people and their families, any reduction in these could be catastrophic. More importantly professionals who are charged with the responsibility for diagnosing ASD may begin to apply stricter or narrower criteria thus leaving vulnerable children without access to necessary early intervention services and support.

Frankly, this article hurt me. I cant help wonder if my son would be one of those children he refers to as quirky but essentially normal. Never mind he can't tell you red from green unless it's on a traffic light. The fact he has constant need to try to control his environment to avoid anxiety. That he cannot communicate effectively despite being verbal. That he needs structure to his day and help to even play otherwise he is overwhelmed. That he is interested in other children, but really has no idea how to interact socially. That he does not sleep well.

Now Allen may well say if my child has all the above issues, then he clearly falls on the spectrum and is therefore not the kind of kid he is referring to in the article. But the thing is I have never met another child with ASD who was not as least equally affected by Autism as Harri, and in most cases much more so. So where are all these quirky misdiagnosed kids he speaks of? Where are they hiding? If it is so cool to have a child with Autism that parents are insisting on the diagnosis, thereby creating skyrocketing stats, where the hell are they? I have never met or heard of an Autistic child who was not affected deeply by their neurological wiring. Are some quirky? Yes sure they are. But the manifestation of ASD in each person cannot be faked. Not for any sustained length of time anyway. Mr Frances should know that.

I am really absolutely fascinated by the fact that ASD is now so common and even when I was a kid it was considered so rare. I've also found it SO hard accept the broader dx criteria as the reason for the skyrocket, mostly because of personal anecdotal experience, which isn't very science-y... It's just that nobody in my family has been dx'd with it up until my son's generation... and now there are 6 kiddos on the spectrum? And half those kids would meet the pre-'94 criteria? (Shrug)

I bring it up because, like you, I know I have some spectrum-y traits... and because of this, I have to say, I worry sometimes about over-accomodation. I was always held to the same standards as my peers, and I think that has been in my best interest. This a-hole, Francis, squanders an opportunity to have a real discussion about such a thing. I don't have answers, and I don't even have a very solid opinion on the matter yet, but I think there is a legitimate concern that when you give a child a label, expectations about capability completely change. Francis sort of twists that into something really ugly.

One funny thing I noticed is his mention of the Korean study... one of the reasons it has been speculated that the numbers are so high in that study is because it specifically screens ALL children in a region, NOT just ones at high risk for a neurological disorder, children who already have a diagnosis, or anything like that. So, what this suggests is it's so high specifically because it caught children whose parents would have NEVER sought out services... sorta contradicts the whole "trendy diagnosis so parents can get into expensive schools" theory, doesn't it?

Hi Sunshine, yes it's an interesting thing to ponder this increase. I stayed away from commenting on the South Korean study because I just dont have the expertise to analyse the research method. It does seem high, but 1 in 38 is a stat I have heard teachers and others who work with children bandy around. Thing is, as far as I can tell, the difference between kids who are just quirky, and those who are neurologically different are quite distinct. There would have to e a whole lot more than a quiet kid who struggles to make friends for me to consider ASD as an option (not that I have a degree to dx) You would never pick my son as ASD until you saw him in an assessment environment. Perhaps this is part of the issue here? I don't know. It's confounding to me that people who should know better are so quick to proffer a theory with nothing to back it up, despite the harm it may cause.

A lot of what gets missed in these discussions is that at least some of the reason for the increased rates is that the sensory nature of the world has changed so dramatically in the past 40-50 years. I flew under the radar as a kid, partly because there was no diagnosis (natch), but also because my senses weren't being assaulted by all the things kids have to deal with today (music in every store, TVs everywhere, boom boxes, loud car stereos, computers, iPods, iPads, etc.) that make the sensory environment very, very overstimulating. The fact that I have to block my hearing to go grocery shopping indicates that, if I were a child now, I'd never be able to fly under the radar. I'd be a shivering mass of sensory overstimulation.

So there have always been lots of us around. Now, between the diagnosis being available and the fact that even non-autistic people can hardly stand the sensory bombardment, it stands to reason that the rates would go up.

And this whole fad diagnosis thing --- in the absence of hard evidence, the man should be ashamed for saying such things.

With 2 sons on the spectrum, my husband has recently discovered that he too has Aspergers. To him it was quite a shock. To me: not so much! He suffered years of anxieties and depression without a diagnosis. Only now does mum tell us that they used to say " Oh David is such an odd child. He only wants to play Lego - for hours and hours. He doesn't like people. He doesn't like change"!! Hellooo! Wish she'd mentioned it earlier. But now, for the first time, he is feeling comfortable in his own skin. Allen and his buddies need to take a long hard look at their views. But oh how I wish they were right sometimes. Autism is blooming hard to live with some days. If only it was all a figment of our trendy imaginations!Great post. Thanks x

Francis Allen is not the only one subjected to frivilous attacks by the nuerodiversity crowd. Leo Kanner, who wrote the first article recognizing autism in 1943 (1) also, in 1965 joined Van Krevelan a Dutch autism researcher and another icon in the history of autism, had the following observation regarding what he and Van Krevekan called the ‘abuse of the diagnosis of autism’ that ‘threatens to become a fashion”:

“While the majority of the Europeans were satisfied with a sharp delineation of infantile autism as an illness sui generis, there was a tendency in this country to view it as a developmental anomaly ascribed exclusively to maternal emotional determinants. Moreover, it became a habit to dilute the original concept of infantile autism by diagnosing it in many disparate conditions which show one or another isolated symptom found as a part feature of the overall syndrome. Almost overnight, the country seemed to be populated by a multitude of autistic children, and somehow this trend became noticeable overseas as well. Mentally defective children who displayed bizarre behavior were promptly labeled autistic” (2)

Another article on what Kanner called ‘abuse of the diagnosis of autism’ that ‘threatens to become a fashion”is discussed in greater detail in the Guardian:

No one can define exactly what autism and what it is not and the trend is towards having no boundaries between disorders and no boundaries between disorder and normalcy. Allen was right in describing the publication of DSM-IV (1994) in having created the false epidemics of attenional, bi-polar and autistic disorder. The trend in DSM-5will continue the 'abuse of the diagnosis of autism' that 'threatens to beome a fashion'.

RAJ I read this same comment when you made it over at A&O. You say "no one can define exactly what autism and what it is not and the trend is towards having no boundaries between disorder and normalcy". This seems a most ill thought out comment.

Firstly in relation to your claim that no one can define Autism. That is inherently false, Frances has been involved in exactly that. See DSM !V, Where a clear definition of ASD is set out.

When you comprehend the reality we are talking about a spectrum disorder then the fact the boundaries have widened is in no way surprising. The notion that there's many, many people who are unaffected by neurological challenges, in particular those resulting in impairment in communication, social interaction and repetitive behaviours, being given a diagnosis of ASD is to me at least highly questionable. Does it happen, sure it does. There's always misdiagnosis. Does it explain the increasing numbers? Maybe by a tiny fraction, but cannot be the explanation for the majority I feel. At least where I am in Australia where we need a developmental psych, speech therapist, and paediatrician to all agree on the dx. AS I said in the above post, if there's so many of these kid around why I am yet to meet one?

Hey, Sharon. Many thanks for exposing Allen Frances for the mean-spirited idiot he is. Coincidentally, two days ago, I singled him out in my First Annual Psychiatric Exasperater Awards (along with three other prominent psychiatrists in flagarant violation of the facts):

I suspect that my son may NOT wind up on the autism spectrum with the DSM 5.

His issues are significant, but are almost exclusively connected with speech, communication and learning - not with a need for repetition and predictability, nor with significant sensory issues. He's never had seizures or sleep issues, skin issues, GI issues, etc. (touch wood), though he has yet to make a real friend or have a real conversation with anyone outside his immediate family.

He falls nicely into the PDD-NOS category, but will later likely fall just as neatly into "social communication disorder" with the DSM 5.

I'm actually thinking this would have been a good thing when he was younger (he's now 15), since so much of the school setting was designed for a person who needed extreme structure, visual teaching tools, behavior management, and protection from sensory insults - and NOT for my son, who needed little of that but lots more help with speech, language and learning skills!

Hi Lisa, thanks for taking the time to visit and comment. IN terms of your son and his speech, is there any echolalia? My son doesnt have sensory or GI issues either. Not is he a big stimmer. Though does have echolalia which I wonder if falls under repetitive behaviour?

Great post, which I'm finding late. I'd be interested for Francis to clarify just what kids he IS talking about, who are just quirky but falsely diagnosed with an ASD and basically normal. Because I know a ton of quirky but non-autistic people...and none of them are carrying an ASD diagnosis. I know far more clearly impaired people who haven't gotten a diagnosis than unimpaired people who have (because that number is 0).

I wonder if the people Francis is mistaking for non-autistic are those of us who have been working really hard to pass for "just quirky." I.e., he's actually being fooled by our survival tactics.

Anyone who thinks it's too easy to get diagnosed with autism, I'd challenge them to go try it.

That's a good point chavisory. I was just thinking recently about Autisms First Child, Donald (the first person/child to be given the formal dx of Autism. He is still alive and living happily and independently, in his 70's. Today he would be considered quirky, yet was clearly Autistic as a child as he was for a brief period, institutionalised on medical advice. He clearly learnt how to manage over time. And this was before the days of early intervention.